Life, Autism, Disability, and More

It’s okay to disagree

question authorityEarlier this week, I attended a presentation on puberty and sex ed directed to parents with children with disabilities. It was, overall, pretty good, but there were a few points that I couldn’t agree with. One in particular is worth talking about.

The presenter said that if a child (or young adult, as the case might be) could feel the urge to go to the bathroom and know where to go, then there was nothing stopping them from being potty trained.

I disagree.

To me, that’s like saying that if someone feels the urge to swim and knows to go to a pool, they can learn how to swim. As someone who has never been able to learn how to swim, I know it’s not true. Having knowledge about something doesn’t mean that you can perform the act.

Her examples to prove this was true was that when kids are hungry, they know to go to the kitchen and find the refrigerator, and that they know that when they’re tired, they should go to their bedrooms and climb into bed.

These aren’t necessarily true, either. When Simon gets sleepy, he would prefer to climb into our bed or even fall asleep on the couch. He only goes to sleep in his bed at night – he has very set rules for himself about it. And while he may go into the kitchen for food, he won’t get it for himself without asking first.

Clearly, there was a flaw to her logic.

I considered bringing up my points and getting her to respond to them, but the presentation was already running long, and I didn’t want to keep us there even longer. But then I thought about it, and decided to write this blog for any other parents who go to a meeting and hear from an expert. Experts are great, and they might have a lot of experience in the field, but that doesn’t mean they have experience with you or your child.

Always remember that *you* are the expert on your situation, and don’t let yourself be convinced otherwise. While I’m all for trying and pushing the envelope, I also understand that sometimes, it’s impossible to achieve something, no matter what an expert tells you.

The great poop explosion of 2016

Oh.
My.
God.

The following column is not safe for anyone who is not a parent.

In fact, it’s not really safe for anyone at all. But you can pretend it is if you want to keep reading. (I don’t suggest that you keep reading…)

Not Safe for Humanity

Let’s start at the beginning. Simon is still not fully potty trained. And we were spending the night in Austin with the grandparents…and he was really fussy, saying he wanted to go home. He started at about 6:30 last night, saying he wanted to go home.

Apparently that was because he had one of the biggest poops ever all stored up, and he wanted to go home to have it. He didn’t want to use their bathroom. So he held it until night.

Then, freaking mother of all that is holy in this world and the next, he let it go.

He released the kraken. (Use any other metaphor you can think of to politely say that he took the biggest dump he has ever taken.) He lost at least five pounds. And while he wearing an adult diaper, it was *not* enough. Not even close to enough.

The boy wrecked that bed.

Let’s not mince words here. The sheets, the blanket, everything had a fairly complete covering in crap. It was horrible. And this is why I never, ever, ever, ever, ever use white sheets and blankets on his bed. But the grandparents didn’t know that.

Dad had the unenviable job of doing Simon clean-up. We had brought two packs of flushable wipes. It was enough. Barely. I have the somewhat more enviable job of starting the laundry. It’s still running right now, and we’re pretty hopeful it will come as clean as possible, but we’ll still be offering to buy all new bedding. Because…bedding. Yeah. It might need to be replaced.

This is day one of a three day vacation. So far, the first day has not gone as well as it possibly could go, but we have two more days to get through, so we’re holding out hope it will get better. It’s going to get better right? It has to get better, right?

Because nothing makes you feel like a bad parent like learning that there are things you should have done 10 years ago

24889346 planning puzzle showing intention and goals

Seriously, no one mentioned (and I never thought) to begin planning for Simon’s post-secondary life when he was three. I mean, I know there are those parents – and we were almost those parents – who begin saving for college the minute their kid is born, but how can you know what your child will be like when they’re an adult?

I have nothing against saving money for a potential future, but to begin planning for your child’s potential career or adulthood when they’re three?

Does anyone know what they’ll be when they’re three?

Can you really know what someone will be like when they’re 18 or 21 when they’re only three years old?

My answer is no. When I was three, I think I was most interested in doing things like squishing slugs (yes, that’s for real – my parents tried to expose me to the glory that was nature by pointing out a slug, and my immediate response was to gasp and squish the heck outta it under my thick-soled shoe), playing on the swings, and eating yogurt (because as a three-year-old I was convinced yogurt was where it was at, and my parents had to lie to me to get me to eat ice cream).

I think my examples are a pretty good reason why it’s not good to begin planning for a three-year old. If my parents had planned my life based on that, I would have been a hippie exterminator with a giant swing set in my back yard. As it turns out, only one of those things is true. I’ll let you figure it out.

Anyway, I still feel guilty about it, but I also feel like maybe that’s a bit too soon. Should I have started looking at his future before now? Maybe. But we still don’t know where he’ll be in one year, much less five years. Since he’s not following a “normal” path, why guess? Why assume?

I’m not saying it’s bad to dream or to hope for the best, but why always plan for the absolute worst? Not to be picky, but you might have a neurotypical child, something might go wrong, and suddenly you’re in the position or picking a care home for them when they’re 14 or 18. If parents of neurotypical children don’t assume their kids will need care for life, why should we assume that? Our children have the same chances, hopes, and dreams…why not figure out how to work with them instead?

Imagine going to the dentist

dentist selfie

Dentist Selfie!

You get to the school to pick up your 13 year old, and you find out that (according to him), no one has told him all day that he’ll be going to the dentist, so the first thing he says when he sees you is, “We go home.” You’re forced to explain that, no, we can’t go home. We have to go to the dentist. He isn’t pleased to hear it.

You haven’t had a chance to grab any apple juice before picking him up because the day had spiraled a bit out of control, so you pray that there is some juice left from his day at school. Thankfully, there is. You convince him that going to the dentist will be fun and give him a juice for the ride.

On the way to the dentist, he reiterates his urge to go home. You think about the previous dentist visits, and you tell him that it’s okay: they’ll take pictures of his teeth (he likes pictures), they’ll clean his teeth, and then the dentist will look at his teeth. You make him repeat it back. You go over it for the whole ride. Then you miss the turn for the dentist’s office and have to make a bunch of left-hand turns in order to get back to where you needed to be.

You check in at the dentist’s office, and you discover that they’ve lost a bunch of information, so you need to fill out the five pages of forms. Two of the pages aren’t things you can actually fill out – they ask about whether or not the patient has pain, has any sensitivity to cold or heat, and other questions that would require a level of communication that doesn’t exist. Then there’s a page that asks you to initial that you understand that only the patient can go back by himself. You go up to the counter and talk to the woman who laughs it off and says it’s okay, there’s no test, but you think it’s kind of important that they realize you don’t know the answers to these questions, and they won’t be able to get them either.

The hygienist comes to get you, and instead of following the carefully prepared order of operations you’ve outlined, she immediately wants to start the cleaning.

Shit.

Your son begins to have a bit of a meltdown the minute he sees the chair and tells you (and the hygienist) quite loudly and repeatedly that he wants to go home. You change the order of operations and begin telling him that it’s just going to be a cleaning and then having the dentist look at his teeth.

He still refuses to sit in the chair. He instead sits in the dentist’s chair that spins, and he stares at the seat while repeating that he wants to go home. He’s almost crying, but not quite. You know that the other patients are probably not enjoying it because they are also kids who want to go home, but you try not to focus on that. Instead, you get into the chair to show him that it’s comfortable and it’s fine, and look, see, there’s a light, and they need the light to be able to do anything, so how about we switch places?

Miraculously, it works.

He gets in the chair for you, but he is still complaining. That’s okay. You rub his leg while the hygienist begins to clean his teeth. And HE LETS HER. Yes, that’s right, he actually opens his mouth, he picks the mint flavor, and he lets her clean his teeth.

You almost kill the hygienist there and then, though, because as she’s working with him (brilliantly well, actually), she begins to try to soothe him and she brings up Dad. You want to crawl inside yourself. Maybe he didn’t hear it, you think. But, of course, he did. And he immediately focuses on wanting to go home and having Dad waiting at home. Neither of these things will happen right away, of course, and now he’s upset again.

You have to tell the hygienist that, no, that’s not a good thing to use to make him feel better because it will only make things worse, and she apologizes, but the damage has been done, and while she’s working so hard to clean his teeth, he is talking around her – quite clearly – and saying that he wants to go home and that Dad will be waiting at home. Inwardly, you are cringing and hoping that he will magically forget it, but you know that isn’t going to happen because he doesn’t forget things.

The cleaning is over, and the dentist comes in, and she gives you the news you don’t want to hear – there’s a big old cavity on tooth number 13 (of course it was number 13), way in the back there, and they will need to fill it. Which is both good and bad: bad because they will need to sedate him, but good because they offer sedation and they do it at 7:30 in the morning, so keeping him from eating until the appointment isn’t as hard as you thought it would be. But now your nerves are even more frazzled because you have to start worrying right away, even though the appointment won’t be for over a month.

Then, to make sure she hasn’t missed anything, she asks to see the x-rays. The x-rays that no one took. The hygienist says that she didn’t because she was worried he wouldn’t let her.

You are mentally slapping your head, and hers, because you had taken that out of the rotation, and now you have to tell your son that, no, he can’t go home yet even though he finished the final thing on the list because the list has been re-ordered again, and now he has to go get pictures taken. But he likes pictures enough that he goes along with it, and he does very well, as you knew he would, and then it’s time to go back and wait in the chair again.

The chair is not happening.

Nope. Not the chair.

Luckily that’s okay because they don’t need him in the chair – they’ve already done all that good stuff, and so he can sit in the dentist’s chair (his original goal), and so he does okay, other than repeating that he wants to go home and then getting a little nervous because a kid in the next exam room over keeps trying to make a break for it and comes past the doorway multiple times.

Finally, it’s time to go find out how much everything is going to cost. Bonus: the day costs nothing thanks to insurance, but the filling will be $400 after insurance pays because of the need for sedation and all the other fun things that go with it.

So you leave, and you begin worrying about his next dentist appointment.

Echolalia for fun and profit! (Except not for profit…)

What Is EcholaliaA few days ago, we were at the comic book store, and Simon came up to me.

“Should we give the Indians food?” he asked.

For those who don’t know it, he was referring to the really horrible (and really funny, but not in the way they intended) Charlie Brown Mayflower episode.

“Yes, we should feed the Indians. Otherwise they’ll be hungry, right?” I said. I always respond to Simon’s echolalia because…well, why not?

He looked at me like I was an idiot and repeated himself, “Should we give the Indians food?”

I stopped and looked at him.

“Do *you* want food?” I asked.

He nodded. “Yes.”

Score: One for Simon, zero for mom.

This is why echolalia can be so valuable. Simon might not know how to come up to me and tell me that he wants to get food, but he can provide lines from a show that gets to it in a round-about way. And I’m good with that.

Yes, I’d love Simon to be able to communicate perfectly. I’d love for his communication to even be at a four-year-old level where he could straight out say, “Hey, I’m hungry!” But that isn’t happening yet, and that’s okay. At least we’ve been moving in the right direction.

So to everyone who thinks that echolalia is pointless or annoying, I want you to consider all the times that you’ve quoted song lyrics or the Simpsons to get your purpose across. It’s just another form of communication.

 

Charlie Brown Mayflower episode for your viewing pleasure (or pain):
https://www.youtube.com/watch?v=4PZE6SNIIr8

 

Simon-Appropriate Chores

25409223 Dishwasher after cleaning processSo there’s been a lot of chatter online about having your kids do chores – “age appropriate chore” charts are popping up all over. At 8, your child can…and at 10, your child can… Except that isn’t always true. Age appropriate isn’t always appropriate. Instead, it really needs to be child appropriate.

In our case, it’s Simon-appropriate.

Yes, Simon has chores. He may only be three or four mentally, but even at three or four, kids can do a whole lot of stuff, especially if you ask them to. He can carry the laundry from the dryer into the bedroom to be folded (although he isn’t good at folding it…yet). He can put his laundry away. He can let the dog back in when she’s in the backyard. He can put his dishes in the sink. He can get out silverware and plates, with some direction.

And recently, we’ve added two new chores to the list. They are animal related. First, he now has to bring the dog’s food dish to the laundry room so that she can get food. Second, he has to refill the animals’ water dish, although we give him the water in a cup so he can just pour it in.

When we started with the water, I was a bit nervous. I wanted him to do it – I prefer to try to push him instead of just keep things at a status quo – but I could just see the water hitting the ground and making the kitchen a slippery mess pretty easily. But imagining it doesn’t make it so any more than not imagining it keeps it from happening. So I filled up the cup, showed him how to kneel down and pour the water, and then stood back and let it go.

He did great. He filled up the water dish, and now if I spot that the bowl had gotten empty, or close to empty, I can fill up the dish and call him over. He comes over, generally happy about it, and fills it up.

Honestly, I think he enjoys having chores to do. For the most part, we let him do his own thing. He watches tv, plays with toys, colors, draws, and does whatever he wants to do. He only ever really gets cranky and tries to refuse when we tell him to put his laundry away, but if we tell him that he has to do it, he may stamp his foot or make noise, but he does it. When it comes to the pets, though, he really likes them, and I think that he likes taking care of them. He pets the cats and the dog, calls them by name, and even named the newest addition (Sammy).

I don’t know if any of this is a sign of how he’ll do when he’s older and ready to transition to the “real world,” but it does make me feel better to see that he can learn to do simple tasks. Who knows? Maybe he’ll wind up cleaning up at a kennel or helping out at a vet’s office. We’ll just have to wait and see…and give him more Simon-appropriate chores to do.

Why can’t we face the truth? Some people are assholes…

assholeOn the 15th of January, the Daily Mail (which admittedly doesn’t have the highest journalistic standards) published a lovely little piece by a woman name Carol Sarler with the lovely little title “Why can’t we face the truth? Having an autistic child wrecks your life…

Let me just start by saying…wow. Seriously. A big wow.

This piece is written by a woman who *does not* have an autistic child. Nope. She has a friend who has one, though, so, like anyone who has stayed at a Holiday Inn Express, she’s an expert.

She says that “brave and devoted mothers…have clung to the positives brought into their lives by their children” because when one child with autism is born, then “three generations of lives – I include his own – [are] wrecked, for ever, by his cussed condition.” Yep. Thanks for telling me, dear sweet Carol, that my life is now “wrecked.” It’s good to know that I’m “brave and devoted.”

That’s not enough for her, though. She points out that the parents can’t lead a “normal” life – “how many shops – or, indeed, how many customers – are going to tolerate a child who screams, bites, defecates and destroys everything within reach?”

Ah, I love people like this. The assholes. The ones who believe that anyone with any abnormalities should be locked up, hidden away. Let’s not modify ourselves and help those who are in need. Instead, we should force them to leave the public life and hide themselves away. A Kennedy at heart, perhaps?

Carol’s point is that she believes in eugenics. “…As the debate rages over the possibility of a prenatal test for autism, with abortion then optional. And, so far, most of the argument leans towards such a test being undesirable and unethical.” She even goes on and states that she never asked her friend for her opinion because “…it is hard for a mother retrospectively to wish away a living child who, come what may, she loves. But looking on, as a relatively dispassionate observer; looking at the damage done, the absence of hope and the anguish of the poor child himself, do I think that everyone concerned would have been better off if Tom’s had been a life unlived? Unequivocally, yes.”

To her, it seems to a simple equation: she doesn’t want her life to be “ruined” by her friend having a seven-year-old autistic son. And while she claims that their lives are ruined, we never hear from them and we never see their point of view. It’s her points. Her opinions. Her being a total fucking asshole.

Not sorry for the language. It needed to be said.

When people like Carol can go around making statements like this, we’re mere steps away from letting people with disabilities be sterilized or put in camps or killed. Why stop by letting them be removed from the womb before they’re born?

I’d like to ask her how she feels about testing people for other diseases. If we know a child is going to have cancer, should we abort it? Because, you know, why let the parents get attached if the kid is just going to die later? And what about physical abnormalities. Those make people’s lives harder, too. Why should parents be forced to use wheelchairs for their children? Hmmm? Perhaps we should develop a test to help us determine who is most at risk for Alzheimer’s and dementia. Because, you know, those people are also a burden on their families and society as well. Why let them live?

Oh, wait, because we’re not a barbaric society who kills what it doesn’t understand. We don’t destroy for the sake of our own ease. We learn to accept and work with what we’re given in life. We love our fellow men and women. We support those who need support and spend our lives in the service of others, not constantly worrying about ourselves. At least, that’s in an ideal world, right? The kind she wants to create through hatred and fear, not love and compassion.

 

 

 


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